Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Arrgghhh!

Daughter-of-TheLight

Recommended Posts

Daughter-of-TheLight Apprentice
Daughter-of-TheLight
Posted

AAARRRGGHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Okay, now that I've got that out of my system....

On Saturday I went to my first real party as a Celiac that I didn't run. To make a long story short, it was at my aunts house and I might Have gotten GLUTENED!!! I was really careful, even calling on the ketchup, but when it was burger time, i found that i had taken a burger from the gluten side of the grill. I had been holding all the frustration inside (they had oreos and there was not one gluten-free side at the party... except for these really hard and not salty potato chips. XP) So I headed off to my aunts room for a good cry. (hey, I'm only a teen...) and my mom coaxed me back out with difficulty. So I'm FRUSTERATED!!!!!!!!!!!!!!!!!!!!

ARRRRRGGGGGGGGHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ptkds Community Regular
ptkds
Posted

I know exactly how you feel. At our church, we have pot lucks all the time. The one thing I looked forward to the most was some home-made rolls that someone always makes. I nearly cried the first time I saw them after I was diagnosed. I don't know how long you have been gluten-free. But if it hasn't been long, it will get a little easier. I am at the point that I am mostly ok around ppl eating gluten, but it still tears me up when my 6 yr old comes home from school or girl scouts and cries because the other kids got some yummy goody and didn't get to have any. That just REALLY breaks my heart.

Rivergirl Apprentice
Rivergirl
Posted

Parties are tough - you don't want to offend, you want to trust, but then........ if you aren't extra careful you get glutened real easily. I have been glutened too many times a parties, that I now bring my own stuff (plenty to share) whenever I go to a party. The other thing I always say to myself when I see a piece of pizza I would just die for, or a piece of white wedding cake -- is: "If I eat this it will KILL me." Sounds kind of harsh huh? But it is true. For years and years I couldn't make it through a diet without cheating but now that I know I have Celiacs and if I cheat, it will indeed lead to the valley of doom - willpower comes very easy when you have Celiacs.

The other tip I can give you, is don't be shy in telling your closest friends of your condition and how critical it is to be very careful in food preparation. Now when my closest friends throw a party, they always proudly share what they have prepared that is gluten free. So your friends are learning along with you...

Best of luck...

Rivergirl

Daughter-of-TheLight Apprentice
Daughter-of-TheLight
Posted
  • Author

I've only been gluten-free for about a month so it's still really hard, though not as hard as it might be for some. I'm homeschooled and I've never had trouble sticking to what I want to. It's just really frustrating because people, no matter how hard they try, can never really understand. At least, not unless they live with or are very close to you. A lot of the time they don't realize that say, frying a burger on a grill that has fried, ah, ribs with non-gluten free sauce can start the process. So it's really, really hard. I'm still trying to get used to the whole thing.

loraleena Contributor
loraleena
Posted

That really stinks. What I do at parties where food is grilled, is I wrap whatever I am eating in foil and seal it completely. This keeps any spatter from marinades, etc. from touching my food. I also bring my own snack food as well, or make a dish to contribute.

Guest Joshua
Guest Joshua
Posted

hi every one.

i have bought this book over the internet and it helps alot. it has most food that u can have to eat in diferent sections. :D

Guest j_mommy
Guest j_mommy
Posted

It's really a bummer to get glutened at a families house...a place that people know and should be careful. Sadly that happens alot to me...My firends are very good about it when I go their houses for dinner but at my families homes it's total cias and I have to bring my own food b/c I don't trust anything there....they just expect me to pick the top off the pizza and it that! :o

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Daughter-of-TheLight Apprentice
Daughter-of-TheLight
Posted
  • Author

You wonder. My friends are actually really good about it when I go to thier houses for dinner and stuff. But in my extended family it's really hard. Some of them are understanding, but others.... All I'm going to say is when I go to my other aunts house to sleep over with my cuz, Im bringing my own food. Aunt K. will be like, "Whatever. Want pancakes?" *sigh*

Guest Joshua
Guest Joshua
Posted

my first football game of this season i won tickets. i brought a docters note and food and to police man let us in it still was hard to to resist the food but i did. it was realy hard i mean realy hard.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.